I have no advice, but this thread is giving me some, so thanks.
Doc suggested I start Plaquenil (he used the generic name, and I went crazy trying to research it, doh!) for the leg cramps that often keep me up all night.
I have IBS-D and celiac, which give me severe GI problems most of the time no matter how perfectly I eat, sleep, and exercise. And Plaquenil, it seems, would exacerbate that? No thanks.
More troubling, I have a disease that comprises an inflammation of my retina. In fact, it led to a cyst in my right retina and now I only have eyesight in the left eye. So although it apparently is rare, Plaquenil could damage my retina and I might lose what eyesight I do have??? NO.
I had an interesting discussion with a young friend of mine who has immune disease (not lupus). She would risk blindness to get rid of her exhaustion and pain. I would have to be in lots and lots more pain to do that.
I imagine I'm not the only one here who has to decide between the lady and the tiger. I'd be interested to hear other people's stories about how you weigh these things.
Often she hid at the sight of wild beasts,
forgetting what she was; and, though
herself a bear, shuddered at sight of other bears.
-- Ovid, Metamorphoses